Highlighting abuse and safeguarding issues in psychological therapies. Campaigning for stronger regulation in counselling and psychotherapy.

Tag Archives: disability

I’m sure some of my regular blog readers are rolling their eyes and skimming past whenever I go off-topic to talk about the Eurovision. It’s something that outside of May tends to be feel (in the UK anyway) like a bit of a niche interest. Which is odd given that it’s the biggest musical event in the world. Personally I enjoy following it because of the way an ostensibly-silly show has a habit of highlighting all kinds of interesting topics.

Last year’s contest highlighted the issue of gender identity, with bearded drag act Conchita Wurst taking the prize. This year, 3 of the acts have physical or intellectual disabilities. This leaves me wondering whether 2015 will do for disability what 2014 did for gender.

In the line-up for the 2007 legislation Grand National we see the return of some old favourites. Waiting for the starters’ orders are the Mental Health Act alongside the NHS & Community Care Act. We also see the return of the Chronically Sick & Disabled Persons Act and … surely not … Yes it is, the National Assistance Act is back for another plod around the course, surely he should have retired by now. We also welcome along one of the favourites this year, in his first year of entry, the Mental Capacity Act is confidently waiting for what must surely be a resounding victory for all those he represents. They’re under starters’ orders, and they’re off …

… but it’s a rather lack-lustre performance from the Mental Capacity Act 2005 (MCA). I’m probably not the only one slightly disappointed by the sluggish start; 5 years into the MCA I have to admit that things probably haven’t gone as some of us may have imagined. I was prompted to write this blog having recalled a recent occasion concerning a gentleman with a learning disability. He asked his carers for support to obtain an application form for a driver’s license and then to complete the form. Instantly, the carers decided that it would be far too dangerous for the gentleman to be driving around and, quoting the MCA, in his ‘best interest’ decided that it would be better if they didn’t support the gentleman to obtain and complete a driver’s license application form. I think the only correct consideration of the MCA were the two words, ‘best interest’ and even they were out of context! On every level, they failed to apply the MCA correctly or even remotely well. If they had, they would have approached the decision from the assumption that the gentleman had capacity (which, interestingly he did) and provided the support he was requesting in the first place.

This of course isn’t an isolated incident and only recently was also reported about on the Community Care website. Poor application of the MCA is widespread, it crosses all levels of care professions and it has to be addressed for the sake of those it should be protecting. If I were the MCA, I would be suffering from a complex right about now. Being misrepresented, misquoted, ignored, it’s enough to make even the strongest legislation question themselves!

Some organisations see the importance of MCA training, but where I often see a glaring hole is in people’s ability to apply the principles and use the MCA as the framework it was intended to be. People can usually quote phrases, provide general themes or even list the 5 principles of the MCA but that is often where knowledge and application stop. Carers and professionals alike should be discussing it daily, in team meetings, formally in supervision and informally. They should be applying it to all decisions being made and actions being undertaken on behalf of someone who may lack capacity. They should be questioning everything and inquisitively discussing whether any action or decision being made is the least restrictive or whether a seemingly unimportant decision made by carers or professionals has just had a significant impact upon individual.

The MCA doesn’t have to be a complex piece of legislation unattainable to anyone who doesn’t have a law degree. It even comes with a very user-friendly Code of Practice to which of course, anyone working with an individual who may lack capacity must have regard for. But it does have to be a piece of legislation that is used well and frequently by all concerned to ensure that we really do act in peoples’ best interest.

If there’s one part of my work which is bound to cause confusion and misunderstanding, I’d say it’s the ‘Deprivation of Liberty Safeguards’ or DoLs as they are shortened to.

DoLs is a complicated corner of legislation that covers particularly those people who lack capacity to make decisions in relation to their care, accommodation and/or treatment (depending on the particular case) who are being ‘deprived of their liberty’ in a care or hospital setting. According to Article 5 of the European Convention of Human Rights, there is a residual ‘right to liberty’ so when someone is ‘deprived of their liberty’ (whether by being detained under the Mental Health Act or in prison) there has to be a legally prescribed process to appeal this and to ground the decision made. The ‘Bournewood Gap’ whereby there was no procedure to deprive people who lacked capacity to make decisions about residence/treatmetn/care was thus ‘closed’ by the introduction of these ‘Deprivation of Liberty Safeguards’ which provide a legal framework to authorise (and appeal, in legal terms at least) these orders.

To my knowledge, the majority of these orders particularly would be made in respect to people with learning disabilities or moderate to advanced dementia.

There was some discussion last night on Twitter about whether this was ‘a good thing’ or not. The article rightly identifies the mess inherent in the current rather confusing and potentially inaccessible system, saying

DoLs are notorious among lawyers, care and health professionals for being overcomplicated and deeply misunderstood. Both the Care Quality Commission and the Mental Health Alliance have criticised the legislation with the latter describing the entire DoLS system as “not fit for purpose”

I’d join in with the criticism to an extent. The current system is overcomplex and the lack of a clear path through the system for service users and for family members is notorious and verging on oppressive. The routes of appeal particularly are unhelpful and challenging DoLs authorisations is a complex process. The other difficulty is that there is a lot of variance in definitions of what ‘deprivation of liberty’ means. This is something that courts reinterpret frequently however thinking back to the safeguards as exactly that – safeguards – mean that by the context of them narrowing we are at risk of providing these safeguards to fewer people.

However regardless of the complexity of the system, these ‘safeguards’ are not bad in themselves. They provide an extra layer of scrutiny into some of the care and treatment of those who lack capacity and can be a potentially very strong safeguard.

The problem is, well, one of them anyway, is that the care home or hospital where the deprivation of liberty is or may be taking place have to make the referral themselves.

Back to the Independent article, it explains that one of the problems is the massive discrepancies nationally and I would concur with this. This is what happens when ‘deprivation of liberty’ is poorly defined.

So

A breakdown of the figures show that whilst a local authority like Leicester made more than 400 applications last year, Reading only made one for the whole year whilst Hull made just three.

This seemed staggering to me. I am astonished/sceptical. Is it really possible that there has only been one person who is in Reading (or for whom Reading is responsible in terms of financing their placement) who was deprived of their liberty in a case or hospital setting over the course of an entire year?

Reading’s response is interesting in itself

A spokesman for Reading Borough Council gave no reason for why they had only authorised one DoLS last year but added: “We advise and support care homes to support vulnerable people, and only use DoLs as a last resort measure.

Well yes, but this more shows a lack of training and advise regarding legislation rather than something that Reading should be proud of. Because to me, it screams that there are potentially a lot of ‘unauthorised detentions’ knocking around.

The problem is that noone is likely to pick up on this.

The Deprivation of Liberty Safeguards are not ‘bad’ per se. They are safeguards and when they kick in, they require two independent assessors to provide a report explaining the terms of the deprivation as it exists, a limit to it and the reasons why it is in that persons’ best interest.

How could they be made better? (and do bear in mind, I’m venturing a little into ‘fantasy land’ here).

Streamlining the appeals process so that it is on a par with rights to appeal to tribunals under the Mental Health Act

Provide a mechanism to trigger referral that does not depend on the care home/hospital

Better define what Deprivation of Liberty is

Provide a regulation framework whereby regulators and inspectors are actually aware of ‘deprivation of liberty safeguards’ and the relevant legislation

Will that happen? Unlikely because there is little resourcing available but however much the phrase might make one shudder with confusion, the Deprivation of Liberty Safeguards are important.

They protect the rights of those who have little recourse and for whom some of the most important decisions are made by staff in hospitals and care homes and by local authorities. These need to be scrutinised and considered but the complexity of the system has been its undoing.

The presence of a DoLs authorisation in a care home is not a ‘bad’ sign. The absence of any (or few) DoLs authorisations in an entire local authority is not a ‘good’ sign.

Poorly administered or misunderstood DoLs’ authorisations are very bad though however used properly, it is very important to remember they are safeguards.

Reading’s pride at the existence of one authorisation over a year is not really something for them to be enormously proud of because I worry about the existence of unauthorised deprivations of liberty – not just in Reading (where obviously they advise and support care homes so well) but in all the care homes and hospitals in the country where those for whom Reading may be responsible are living.

Sometimes it isn’t as simple as saying ‘rising authorisations’ are bad or that they are ‘good. It’s about the subtlety of implementation and review.

Most worrying is the variation. If anything points to complex law and poor information sharing – it is that.

Something to learn for local authorities around the country, I hope.

And hopefully a lot more work for those who train people to understand and use the deprivation of liberty safeguards properly!

‘Carers Week’ begins today. While the ‘official theme’ of the week is ‘In Sickness and In Health’ with a focus on the health of carers, I would provide my own theme from my position of having worked in social care for a fair few years as ‘more than words’.

Carers’ need more than accolades in order to feel supported and be supported properly. We need to be able to provide resources and that needs money.

Over the last 15 or so years, there have been definite changes in the status of ‘carers’ in social care organisations. We have rolled out ‘Carers Assessments’ and have been able to provide services for carers directly as a result of new legislation. While we assess the needs of carers – what we don’t have and where the disconnect exists – is a duty to provide services and nor national criteria about where a service should be and must be delivered.

The problem I face all too often is revolves around carrying out Carers’ Assessments (of course there is a target for these) but not being able to actually provide anything as a result of them. To which the obvious question I am asked is ‘Why do them if they only provide information to the Local Authority?’. My local authority, fortunately and for now, at least, is fairly generous with carer support and direct services but this is by no means universal.

I have been fortunate to see and provide some excellent services through direct payments made to carers and in a lot of ways, the services I have been responsible for providing as direct payments to carers have been a lot more successful than some of my experiences with direct payments more broadly. I am able to encourage assessments with the possibility of a direct service provision as a result but I know this is by no means universal.

Assessments in themselves can be useful if they are conducted well and sensitively. Sometimes allowing a carer to have the space to discuss their own needs and explain fully the care they are and do provide and the effects that this has on their own wellbeing/goals and lives can be valuable – however there comes a point when this has to be acknowledged in a more ‘real’ (and yes, that can mean costs) way than smiling and nodding. More than words.

I’ve also seen an increase in the ‘posting a carers assessment out’ style of assessing which can lose some of the subtleties gained in a conversation and a visit. Of course, not everyone wants an assessment because the language and the questions can be formalised and particularly we get the ‘I’m not a carer, I’m a spouse/child/parent’ response but I’d counter that’s something that can be addressed by a change in the way of ‘paper assessment’ and the language and discourse models that exist around social care. Why can’t we be more flexible regarding what an assessment actually is? Do we have to ask the questions on the form?

We give, others receive but that’s a tired model – particularly in relation to carers who give us, as a service and organisation – much much more than we can ever give them.

So why is it reduced to a paper assessment logged onto a computer database? Because that allows performance indicators to be met.

My ideal service would be more flexible about the ways that assessments are compiled and would allow much more for free text and less on box ticking. Box ticking can help some clarify but it by no means captures what role caring plays in all lives. ‘Caring’ is not uniform. There are a myriad of needs and a myriad of ways to both communicate this need and for support to be delivered – or there should be. If people want boxes to tick, by all means provide them but if they want open space to discuss or write or record what and how they feel about their role and what might help, then allow that too.

We also (in social care) need to work on our assumptions a lot. Families exist in different ways and have different histories. There may be many reasons that don’t need to be disclosed about caring may be more difficult in particular situations and assumptions can be very damaging.

The new Adult Social Care White Paper is imminent, apparently. There needs to be a commitment not just to assessments of carers but of delivery of services and support to carers. More than words.

While the government talks about ‘respite’ and the need for breaks, I’d argue that is essential but while the provision of services is being cut and there are fewer, more distant places to offer respite the realities will remain as far from the government planning as they are at present. Capital investment and investment in decent staffing in homes that offer respite consistently would help. Clear explanations about entitlements and potential costs would help. Services that speak to each other would help. Pooled budgets would help but the easy words come thick and fast. The solutions can’t be found by words alone.

The current system as it exists relies on carers significantly to ease the burden of cost of the social care system. This needs to be more transparent in terms of publishing details of how indicative personal budgets are arrived at and the amount that is ‘saved’ by a carer. If some of these ‘savings’ (not even a minute proportion – but some ) is ploughed back into effective and personalised support with professionals who are able to access and feedback good, local information and provide support and training to carers where they want it the savings over the long term would be much higher.

The cost of poor support for carers is much much higher than the cost of good support – but in these times of ‘belt-tightening’ it can be forgotten while we reach the goals of short term savings.

It’s a lesson that both the NHS and social care systems would be mindful to heed.

In order to support carers ‘In Sickness and In Health’ the government, the organisations such as the NHS and local authorities, employers and communities needs to provide ‘more than words’.

Around 18 months ago, I offered some consultation to a small project that planned to set up activity days where children in care met prospective adopters. Last week I saw a DVD of the first event. There was no sense of the controversy that surrounds these so-called adoption parties. Children, their social workers and adopters mingled happily during the course of a day’s outdoor activity and lunchtime entertainment. The adults acknowledged some awkwardness from their respective standpoints but all agreed this was outweighed by the positive experience, not only of meeting children but also of feeling part of something larger and important. All valued the careful preparation that had preceded the event.

Seven children were subsequently matched and two more were in the pipeline. One, a severely disabled young girl, had been waiting almost as long as the project had taken to reach fruition. On the day, some carers met her, a real person now rather than a case or a prognosis, and an emotional bond began to form. In the carer’s words, “We just clicked.”

It’s an innovative approach not without its risks and detractors and it’s not right for everyone, but it worked. Other opportunities could and should exist for finding more carers for siblings, disabled children or black children, where shortages of adopters exist. Or just for children full stop. Yet the government is not supporting such practice-based local measures in favour of grander solutions to address long-standing problems in the adoption system.

There’s no doubt that something has to be done and the government’s drive for action comes from the very top. Michael Gove has taken the lead and adoption reform is one of Cameron’s top ten priorities in the life of his term of office. Those in the profession who are involved can barely keep up with the breakneck pace of consultation meetings and unpredictably changing policy drafts.

The result – everything is going to be quicker, including the point at which children are taken into care. The headline news was one measure in particular, that culture and ethnicity is to be of secondary importance to finding a good home. The announcements were accompanied by powerful and moving testimonies from parents who had successfully adopted children from a culture different from their own. Those who have not had such a positive experience were conspicuous by their absence, although articles did emerge as the days went on.

Whatever your views, it’s disconcertingly easy for the evidence of the lasting effects of culture and background to be shunted into the sidings in favour of the ‘common sense’ conclusion that children are better off in a home than they would be in care, regardless of the consequences later in life. The seductive comfort of common sense in adoption provides a measure of security and sanctity for almost everyone involved in the adoption process, except for the child who has to deal with this, now and for the rest of their life, and has nowhere to hide.

Many decisions about what constitutes a cultural match are absurdly arcane and are based not on a proper understanding of the child’s history and perceptions of their own identity but on a skewed, mechanistic process that equates ‘culture’ to a sum of their parents’ ancestry and distorts complex reality as much as the common sense approach. I’ve come across siblings who waited and waited because their maternal grandparents were Polish and no white family was considered unless that box was ticked, or black prospective adopters rejected because they lived in an area of London that was predominantly white.

Of course there is some truth behind the government’s apparent wish to relegate culture and background to a minor role. The remedy, however, isn’t an arbitrary shift based on ideology and expediency. Rather, it is about better practice, better assessments and a more preceptive insight into the subtleties of identity. This in turn leads to improved matching, including both an acceptance that perfection is not possible every time but also what does and does not constitute an acceptable deviation from the vital principle of a cultural match, what the evidence is for such a conclusion and how this will be handled, now and in future. None of this is encouraged by the proposals.

Which brings me on to two other problems that I have with the government’s suggested reforms. One is that it views carers as static and unchanging, rather than individuals who can learn, develop and grow into the task of being an adoptive parent. How might they develop, what is their potential and how can this be nurtured? And here’s point two, the thorny question of more post-adoption support, which adopters’ organisations will passionately say is the biggest problem we have at the moment, as opposed to dog assessments or paperwork that the government would prefer to focus on. Both these suggestions, extra training and support post-adoption, taken together require considerable extra funding, so they are not a priority.

Of more interest is the idea that children can be placed with their prospective adopters and effectively fostered until the order goes through. This could make transitions easier and create less change for children. However, it is not without its problems. As Adoption UK point out, adopters want to do just that, adopt. The fact that children may have contact with the birth family while they wait or may be removed if the order does not go through could act as a deterrent to carers coming forward.

As I have mentioned in previous posts, the proposals appear to take little account of the court process. Changes are in the pipeline but parents and members of the extended family will still have the opportunity to prove they are a worthy alternative to adoption. These issues and the time-consuming and resource draining assessments that accompany them can delay an adoptive placement extremely effectively.

I desperately want the system to make good placements for children and young people, and to make more of them. It’s needed now more than ever before. My fear is that the complexity of meeting the needs of vulnerable children hopeful for a stable future will become lost amidst the targets, league tables and rhetoric.

The Care and Support Alliance is campaigning to change the current system of care which exists, claiming there is a ‘care crisis’ which needs fixing and is pushing the government to act on Dilnot’s proposals to change the system of funding for social care.

There is much that needs to be changed – not least the funding of care which at the moment is very dependent on location. It is a postcode lottery of funding in every sense of the word with different local authorities having very different systems which creates a very extrinsic ‘unfairness’.

But there is more that needs to be changed than just creating a more equitable national system of payments for care. There is much about the way care is delivered, commissioned and organised that needs changing too.

There needs to be an improvement not just of the quality of care that is delivered but the quality of support that is offered to families of people who have care needs. While the government can have as many meetings about improving dignity in care as they like, these reports will all sound the same unless they do more to change the fundamental way that services are financed and delivered. Currently pushing costs between health and social care is detrimental to those who need support from both and until there is both better integration of budgets and greater attention to the fundamental needs of

Everyone needs to push on this point. We have to actively engage with the government to show them how much this matters and how much it matters that social care is important as a political issue. Health and Social Care are intrinsically connected and money pushed between one and the other without proper systems will cost more to both but not much in money, in quality and length of life, in stress and distress to those who need care and those who provide it.

The government has to act. Please join the Lobby or the #Twobby to make our voices heard together.

Also, I am nothing if not a creature of fashion, a cool and with-it hipster, daddio, who is always up to date with the latest trends.

And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.

And who can blame them? Not only do you get money from the Government and don’t have to go to work – but if you play your cards right you might get one of those badges that lets you park wherever you want. Right in front of the cashpoint, for example. And you can use those enormous toilets with levers and handgrips and emergency buzzers they have in all public places, without feeling too guilty about it.

You know what, Rod? I think you need to put your money where your mouth is. You want to be disabled? I cordially invite you to disable yourself. Saw your own legs off. Blind yourself with a spork. Binge-drink until your liver and kidneys are comprehensively wrecked…Oh wait, you were probably doing precisely that when you wrote this drivel. Live the dream, enter the fashion set and actually become disabled.